Exhausted!

There are no words to describe how tired my husband and I are. Camryn has her official second cold and is miserable. She was up all night last night crying, coughing and sneezing. We've tried every medication/holistic medication you can give a baby for a cold and nothing worked!! We wound up giving her benadryl at around 2 in the morning and she fell asleep for an hour! I can't believe she's not acting tired this morning. We had to cancel therapy which I have never done, but they have a sick policy and I wouldn't want her to get anyone else sick. I hope she gets better soon we have a playdate planned for tomorrow with some of our favorite people. (our friend support system)

5/30/2013

Do you ever just have one of those days where you feel like your entire first year of your child's life has been nothing but getting her arm to move?! I'm definitely having one of those days today. I don't even think I've ever purchased a toy for Camryn without it being for some type of therapy. Even while we are feeding her I put it in front of her left hand so that she is enticed to use it. I hope during this second year I get a chance to enjoy Camryn a little more and not be totally encompassed by getting her arm better. 

On another note, we have her one year early steps meeting on Tuesday to go over our new goals for her second year. I wonder what happens when she turns 3? I know Early steps stops but than what? How much therapy will she need?

Support Chat

I'm excited because today I posted on facebook about starting an online chat support group for parents with Children with Erb's Palsy and I'm already getting responses. If anyone reads this on here and would like to be part of it please feel free to contact me at the bottom of the page or because a member on google connect and like the blog. If not please feel free to find me on facebook and friend me. I'm not sure what interface I'll be using but I'm hoping to get a chat going for JUNE!!

Gotta start somewhere!

Stem Picture

5/29/2013

It's pouring out! Which makes me want to go absolutely no where with Cam because I'll get soaked and so will she! I guess today will be a day filled with tons of therapy and her STEM machine. I don't know if any of you are following my pinterest page but we have started to put the STEM in a fanny pack so she can be on the go and still have the machine working. I'll post a picture later today. Yesterday, Cam wore a tank top and her left shoulder kept falling off. I've heard this is common with Erb's Palsy because of the way the shoulder muscles are atrophied, it just made it more real.

Scary Statistic

Is this true even for parents with kids with Erb's Palsy?

Click here for the NYT article:

The Psychic Toll Paid in a Special Needs House

Attendance

You know those awards that kids get in school for good attendance? I think Cam and I should get one of those. We've been going therapy for a year now and we have only missed therapy twice. Once because I had a flat tire I needed fixed and the other because the therapists were both away. YAY to us!

Finally Holding Bottle...Better Late than Never

Big things keep happening! In the past week Camryn has decided and can finally hold her own bottle. I know we probably should start transitioning to a sippy but she already drinks water out of a sippy with a straw. Cam absolutely is refusing milk out of a sippy right now. All I want is a happy baby so I'm not pushing it. She literally doesn't want you to hold the bottle for her anymore and you can just hand it to her and she'll hold it and drink it, even if the bottle is full. (her left arm used to be too weak to do this) EXCITING!!

First Birthday Pictures

Just wanted to give a huge thank you to Naomi Bluth Photography for amazing first birthday pictures.

http://www.naomibluthphotography.com/

She did an amazing job and we even got Cam to eat her cake with her left hand!!
Some of the pics have been shared on her facebook page and shared on mine!

Celebration

Today, we get to take a much needed break and celebrate Camryn's birthday. We are going to the zoo with a couple of friends and some family. Camryn loves animals and has never been to the zoo so this will be a first! It's very exciting. I promise to take tons of pictures to post. Also, another huge deal over the past week. Camryn has started holding her own bottle. (better late than never) She has always struggled with holding her bottle because of the rotation in her left arm, but she can finally do it!

Facebook

I've met a bunch of Mom's on Facebook recently going through the same thing. Which gives me even more reason to write this blog. I hope they follow along and one day we can meet/ talk or email. My ultimate goal for this blog is do something bigger where Mom's and families can have an outlet to talk about what has happened and what they are going through. I don't want anyone to feel like they have to go through this alone or to feel ashamed.  I hope that one day I can make a meetup or support group for Mom's and families in South Florida to meet. Even if it's just a play date with the kiddos.

Camryn's First Movement

I know this supposedly doesn't count but when Camryn first starts to get movement it's always on her back first. This is the first movement we ever noticed! I'm pretty sure she was almost 4 months old here.

(just noticed this wasn't working properly so I reloaded it)

Putting Two and Two Together

Since Camryn was born she has been pretty laid back. Of course, she has her moments like any other baby but she's a good girl. There was a pattern that I noticed early on in her recovery which is when she gets really fussy for no apparent reason she gets new movement in her arm. I was never sure if it hurt her or if she could and can feel the nerves growing back or if it was that limb falling asleep sensation that everyone says she feels in her left arm. But the past couple weeks she was out of control fussy and ridiculous and of course on Sunday was the new movement of hand to ear. So that explains it! Once she started doing that her moods have changed back to happy and she's napping again. Or for at least this week she's napping.

Pinterest

Feel free to follow me on Pinterest. I've made a board for Erb's Palsy and it includes some of the things we do with Camryn and things we have already been doing with her.

Here is a link to my board:

Pinterest Board

5/22/2013

Yesterday was Camryn's first birthday. I can't believe I made it through a year of parenting! I feel so accomplished. If anyone had told me how hard it truly is I may have thought twice. We had therapy yesterday and celebrated her birthday there and after we took her to my husbands office to show her off. I can't believe we've been going to therapy for almost a year. We started when Camryn was only 2 weeks old. At this point I feel like her therapists are part of our extended family. Today, Camryn is not going to like so much as we have a 1 year check up at the pediatrician.

Happy Birthday Letter To Camryn

My Dearest Camryn,

     Happy birthday my sweet baby girl. You are the love of my life and you have filled my heart where it was empty. This past year has been a tough one. You've really tested the strength of your Father and I. I remember the first time I got to see you, three and a half days after you were born, I just couldn't believe it. You were perfect. It was just such a miracle. From the very beginning you've been a fighter. Even through sleepless nights you knew just what to do to make my day and make me smile or tear with joy. I've watched you grow and heal. One day, I'll tell you the story of what happened. But I want you to know that your father and I did everything and sacrificed everything to help you be the the best you could be. I never want you to doubt our decisions because we have always put you first. I love you with all my heart and can't wait for you to reach your next milestones. It's been an amazing first year and I can't wait for the rest of your life!

Love,
Mom

What is Erb's Palsy?

According to Wikipedia Erb's Palsy is:

Click on the link...

Erb's Palsy

The Little Things..

I know this may sound ridiculous to many but not to me. Ever since Camryn was born she has always played with her ear when she starts to get tired. (I've been to the doctor countless times to make sure it's not an ear infection.) Anyway, so for the first year of her life we have always known she was tired when she started playing with her right ear. She has never ever been able to use her left arm to get to her left ear. Well, today 2 days shy of one, she started playing with her ear with her left arm. Gravity unassisted!! (I'll explain more about gravity later)  It's the little things that happen every day that put all the hard work we did this year into perspective. It's the little things like my daughter touching her ear that make me cry with joy.

5/19/2013

Today was such a perfect day! We went this morning to take pictures for Camryn's Birthday! She loved it and it went so well. She also started using her left hand to touch her ear! Which means awesome rotation and overhead! Very exciting. We also had a big night last night because my husband and I went out for the first time ever without family watching Camryn. We had our first night out with a real babysitter!

Such an awesome weekend!

5/16/2013

We have therapy again today. I'm a little nervous because when we went on Tuesday the therapist said Camryn's elbow was tight. I've been trying to do Cam's stretches with her daily but she is old enough that she hates it and is starting to resist and freak out when I try to stretch her. She really hates being fussed with at this point. We've been putting the splint on more often to keep the arm extended. I hope she is not getting an elbow contracture.

Big Things

Today, was an awesome day! Cam's Pottery Barn chair came and she sat in it and loved it!! I put the dogs in the chair with her and she couldn't get enough. Camryn also took two steps all by herself which is awesome and so exciting. But makes me think therapy is not going to go so well when we try to do weight bearing and have her use her arms. She also used the fork the right way today for the first time but she used her right hand instead of the left. BIG THINGS!! What an awesome day.

5/16/2013

I went to Whole Foods today to get Camryn Coconut Milk Yogurt because she loves it. Anyhow, I was super excited to see that they are now selling Organic Valley's Grassmilk. We are considered a test market but it tastes awesome!

http://www.organicvalley.coop/products/milk/grassmilk/

Hope

I saw this yesterday after someone posted this on their Pinterest page. I really want Camryn to see this doctor. I know it's a long video but she talks about how you can rewire a child's brain after an injury so they can still do things that they have not been able to do due to injury.

This morning Camryn and I ventured out to story time at our local Learning Express. A good thing about Camryn going to therapy at such a young age is she just always wants to socialize. She walked around holding my hand and wanted to interact but the kids were a couple of years older. After we got home, she was OOC! (Out of Control) She finally calmed down and I was able to put her Little Tikes bike together.

Below is a picture. You'll notice that she leans to the left side of her body because it's a little weaker..She really liked it!!

It's ok to have a bad day...

Sometimes I need to remind myself that it’s ok to have a bad day. Especially, in the beginning I would have more bad days than good. I would just feel so overwhelmed and helpless waiting for movement in Camryn’s arm.  It seemed as though every toy I bought had to do with Camryn’s therapy and all my time and effort with her was spent getting her to move her arm. It all paid off but it’s ok to feel overwhelmed and have a bad day once in a while. I still sometimes feel that way trying to get everything in for the day. I just came to realize that I can’t do everything every day and I do what I can. At some points I’ve felt that every time we went to therapy they added something else for me to work on at home. There was no possible way with an infant that I could work on everything, but I did the best I could. The most important thing for me was trying not to let Camryn notice when I was having one of those days. I would put a brave face on and smile and pretend with her. But when I got any time alone I would just let myself unwind.

Back from Therapy

We are back from therapy. Not as bad as I thought it would be. This time we were able to distract Camryn enough that she didn't freak out. This is a video I took of her crawling for food.

 

Tuesday before Therapy 5/14

Today we have therapy. We go twice a week for an hour. Plus the therapy we do at home every day. I think one of the biggest challenges we are starting to face is that Camryn knows what she likes and doesn't like. She doesn't like being told what to do. Last Friday, at therapy she literally cried through the whole half hour of physical therapy. Not just upset and whine and complain but the type of cry where she is screaming at the top of her lungs. She's crying bloody murder. She just didn't want to walk and be bothered. We tried bribing her with food but she was just too upset. I know it sounds cruel but we work through tantrums because she needs to do the therapy and because we don't want her to think that if she cries she wins. She's at the age now where she is testing all of us. She was fine through the other half hour of occupational therapy, we fed her almost the entire time so she didn't complain. Like I've said before, she'll work for puffs. Another issue that has come up is that in physical therapy we are working on walking because that is where Camryn should be but in occupational therapy we are still working on weight bearing so both therapy sessions kind of work against each other. I guess we'll have to see how today goes. 

                                      

Camryn loves the Happy Baby Puffs or the Graduate Puffs! Thank Goodness for puffs. We wouldn't get through therapy without them!

Why me?

I’m always that person to ask why me!?? I think this is it…so I can go out and make a difference…that is why me…I believe what doesn't kill you makes you stronger...

I hate when people say to me “It’s just her arm”

Well, I’m here to tell people IT’S NOT JUST HER ARM!!! Camryn’s Erb’s Palsy has affected her whole body. She’s asymmetrical with strength, which in turn affected her sitting up, crawling, and now walking. She walks with her feet turned towards her left side and her right foot always leading. We are working on fixing it, but people don’t get it. Yeah, it’s getting better but it has totally changed her development and she has had to learn to do things that babies normally do in different ways. She can’t hold her own bottle, she’s not ready for forks and knives, she can’t feed herself properly with her left hand and now she’s having trouble walking too. ALL BECAUSE OF HER ARM! It’s not her arm first off it’s her brachial plexus nerves that are connected to the spine. Yes, those nerves affected her arm but it’s considered a spinal injury.

I've been working on Pinterest Board for Erb's Palsy: Check it out and follow. I'll also be adding stuff that really helped us during Cam's first year. What my husband and I call lifesavers!


http://pinterest.com/carlybwalker/erbs-palsy/

http://pinterest.com/carlybwalker/lifesavers-for-babys-first-year/

 

Thoughts on Mother's Day

   

When Camryn was born she was hurt and now has Erb’s Palsy, which is a disability that affects the brachial plexus nerves in her neck and left arm. She’s been going to occupational and physical therapy since she was only 2 weeks old. We go twice a week for an hour. She had major surgery to try and repair the nerves when she was only 8 months old. After the surgery she had to endure two weeks of being in a body cast and neck brace and living in a little red wagon.

     I’m not writing this for sympathy, I’m writing this to all the moms out there who say why me? Why does my baby cry all the time? Why doesn’t my baby walk yet, why does my baby have torticollis or have to wear a helmet. I’m writing this for all the parents who think that it’s only them.

You are not alone. Every baby has something. Whether it be fussiness, being high maintenance, developmentally delayed, speech delays, sensory issues. It’s all the things us mothers are afraid to talk about with each other and we shouldn’t be!

    I wish as a new mother that I had thought this almost a year ago when Camryn was born. Instead , I isolated myself and was ashamed of my daughters disability. But here I am now, saying I’M NOT ALONE and YOU ARE NOT ALONE.  Over the past year I’ve had a lot of learning to do about myself, my marriage, and raising a child. Especially, being thrown into raising a child with a disability, I thank god that her brain is ok and she is a happy go lucky baby who loves everyone.  But the difficulties that have come with being a new mother and having to deal with all of this was overwhelming. I wish more women or new mothers felt comfortable enough to talk about the difficulties they are having or have had.

I can remember when we first came home from the hospital I kept searching for support groups or anyone else to talk to about what I was going through but there was nothing in my area. All that was offered was breastfeeding support. I hope that after reading this people are able to talk to one another about what they are really feeling and not be ashamed or feel like they are alone. Just remember, no one is perfect and you are not alone.